Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this part, we discuss how to get medical attention, stay in touch with doctors, and cope with the deteriorating medical status and related decisions.

Questions/ Comments by Dementia Care Notes: What sort of doctor(s) should the family stay in touch with?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): You need a doctor who knows about dementia, and knows the status of the person with dementia. This is usually a psychiatrist or neurologist. Ideally this is the doctor who diagnosed the person and who has been with you all these years. If you change your city, ask your doctor to suggest a doctor in your new city. Make sure the new doctor you go to knows the case history. And stay in touch with your dementia doctor. Doctors cannot help families they are not in touch with.

You will also need a home doctor or GP (general physician) for immediate medical attention for problems like cough or urine infection, and for handling normal ongoing problems like diabetes. You can’t go to a dementia specialist every time for such things. You don’t need to. Look for a physician near you, maybe from a neighbourhood diagnostic facility.

DCN: A common problem is that specialists rarely make home visits, and it is difficult for families to take someone in advanced dementia to a specialist. Can you suggest practical ways for families to stay in touch with a dementia specialist?

Dr. Hegde: Till it is possible for you, take the person for a visit every six months or so.

Later, maybe taking the person to a doctor’s clinic is no longer possible. Maybe you can’t get the person with dementia in and out of a car easily. But the family caregiver can meet the doctor anyway. Book an appointment with the doctor. Use that appointment slot to give the doctor updated information. Show the doctor home videos of the person doing various things. The doctor can review these videos and get to know how the person is walking, talking, eating, etc. The doctor may ask questions like, does the person cough when given water? Or the doctor may ask you to check something.

If the family stays in touch at least once every six months in this way, the doctor has the updated status about the person, and knows how the person is progressing.

If the family stays in touch at least once every six months in this way, the doctor has the updated status about the person, and knows how the person is progressing. Many doctors who are kept informed like this may be comfortable advising families if contacted for a problem. Ask your doctor what contact method suits them in case you need help for a problem, so that the doctor knows you may call or message them between appointments.

DCN: As the dementia gets worse, the person will decline. In addition to dementia, other medical problems may also be there.

Dr. Hegde: That’s right. You need some type of regular check-up. In fact, that is why you must stay in touch with doctors, so that they can tell you what to look for and how, and tell you which tests to get done. You need to be able to spot problems.

…persons in late-stage dementia may not tell you about pain and other problems, so observing and remaining alert is very important.

The difficulty is that persons in late-stage dementia may not tell you about pain and other problems, so observing and remaining alert is very important. Keep your doctors updated, so that they can suggest what to look for.

DCN: This brings us to the challenge where the person with dementia develops a problem that needs major hospital treatment like cancer or kidney problems.

Dr. Hegde: This can be quite tough. The person was already suffering because of dementia. Now there may be something additional where it is usual to give aggressive care. Often such problems don’t even get noticed in early stages and with late detection, the treatment required is even more aggressive.

Take the example of certain types of cancer. The caregivers may not know that the person has pain. They may not notice anything till the cancer has advanced so much that the skin manifestation is obvious. Even then, they may first think it is an abscess and try to treat for that. It takes time to realize that this problem needs a hospital check-up.

At a hospital, after various tests and scans, they get a diagnosis. The cancer specialist will advise on an approach suitable for cancer given its stage. He will probably suggest a timetable for treatment. What is the family to do next?

Persons who have dementia along with other serious medical conditions need a multi-disciplinary approach. You cannot go just by what one specialist says. You need someone knowledgeable about medical aspects to help you.

This is where you need a doctor who understands dementia and who knows you and the person. You can consult your dementia doctor and ask your questions, like whether the suggested cancer treatment would increase the quality of life or not, what would happen if you don’t want that treatment, will there be pain, etc. You can then go back to the cancer specialist to discuss more. Or maybe your dementia doctor will be willing to liaise between you and the cancer specialist to help decide what to do.

Persons who have dementia along with other serious medical conditions need a multi-disciplinary approach. You cannot go just by what one specialist says. You need someone knowledgeable about medical aspects to help you. This person will get all the information, ask various doctors the questions, coordinate between them, and put things in perspective for you. If the dementia specialist does not do this liaison, maybe you can ask a GP who knows you well enough. Or a friend or relative who is a doctor. Or maybe a palliative care team can help with this liaising. But you will need this coordination.

DCN: What about surgeries? They will involve a similar decision process, right? Are there some more suggestions on what to keep in mind for surgery decisions?

Dr. Hegde: Surgery decisions depend on the benefit you generally expect because of that type of surgery, and on whether you think the person will actually get those benefits.

Some types of surgeries may not be particularly useful in this advanced stage.

Basically, a surgery decision depends a lot on the level of cognitive impairment of the person. How will the hospital stay affect the person? How much of the required post-operative care and rehabilitation is possible given the state of the person?

Take the case of operating for a fracture. In advanced cases, it is unlikely that the person with dementia will be able to follow the post operative physiotherapy protocol. So surgery with the intention to help them mobilise again may not be realistically possible. Yet , surgery may make it possible to enable the person enough to use a wheel chair and to reduce the pain associated with a fracture. So there are many aspects to consider.

Or you may decide that the risk of anesthesia is too high and you may not wish to proceed. In this case, you could discuss options of care with the doctor such as traction and maintaining the position of the fractured limb. A physiotherapist can tell you how to move and help the person till the person heals naturally.

For decisions like surgeries, it is good to discuss multiple aspects with experts and maybe also talk to families that have faced similar situations.

But if the person is cognitively well enough to cooperate with post-operative work, a better quality of life can be expected.

For decisions like surgeries, it is good to discuss multiple aspects with experts and maybe also talk to families that have faced similar situations.

DCN: Some doctors are gentle and patient when explaining things to families. Some are brusque. What can family members do to make their interactions with doctors more informative and pleasant?

Dr. Hegde: Again, let’s take the example of cancer.

The doctor gives you the cancer diagnosis, explains it, and recommends some course of action. You and your family should think about what the doctor said and what you want to ask next time you meet the doctor. You may want to ask about the prognosis (what to expect in the future, chances of recovery, etc.). You may want to know why the doctor feels treatment is needed, or why the doctor feels treatment is pointless. You may want to know what will happen if you decide on no treatment or a milder treatment– what kind of harm will the person come to, what sort of pain the person may have, and so on.

Once you are ready, meet the doctor to ask your questions. The doctor may say, I am not the best person for these, and refer you to someone. Or the doctor may explain things to you. In either case, if you don’t have your answers or are not satisfied, get a second opinion.

Take the report to another oncologist. Ask people around you for references to doctors who can explain these things to you. And talk to your dementia doctor.

When talking to a doctor, the tone of your voice is important. If you are agitated and loud or if you start arguing, the doctor may withdraw, and may not tell you all they can tell you.

When talking to a doctor, the tone of your voice is important. If you are agitated and loud or if you start arguing, the doctor may withdraw, and may not tell you all they can tell you. Stay calm and patient.

DCN: Sometimes the person falls ill and is rushed to the hospital because that’s what we do when someone is ill. At the hospital, we may have very little involvement in the decisions the doctors and nurses take. They may use aggressive treatment. Also, person may get worse. Sometimes the person is put on a ventilator and family members don’t know whether to continue with that or discontinue it.

Dr. Hegde: Yes, that happens. I’ve had families contact me for advice. The hospital doctors tell them that if they take the ventilator off, they can’t say what will happen, and that is true.

I ask families to look at the state of the person at that point. Think what the person was like before being put on the ventilator. Suppose the person is able to breathe after removing the ventilator –the best-case scenario—what quality of life will the person have? And if the person remains on the ventilator, you don’t know how long it will be, it could go on and on, and it is costly and you are just waiting, unsure of what to do next. See what you find acceptable.

Such situations are very difficult for the family. Maybe the family has discussed about end-of-life decisions earlier. It is good if the family is together in this decision and has the help of a doctor who knows them.

DCN: All through this process of decline, the late-stage person is being cared for by one family, but their siblings and close relatives may be in other cities/ countries. What suggestions do you have for keeping others in the family informed?

Dr. Hegde: Your communication approach essentially depends on your mutual understanding and what you can do without increasing your stress and work. You can definitely try to keep them informed. If the remote relatives want, and you can coordinate it, video Skype is an option to make remote family members feel involved and informed. They can talk to you, and also see the person with dementia and understand the status better.

If such ongoing updates and communication are adding to your stress, explain your limitations to these remote family members.

Note that it may not always be possible for you to keep distant relatives constantly updated. You will be busy and worried yourself. If such ongoing updates and communication are adding to your stress, explain your limitations to these remote family members. Don’t hesitate to ask for help if they offer.

And as I mentioned earlier, keep in mind that you may need to discuss end-of-life decisions with family members.

DCN: Dementia is called a life-limiting condition. Ultimately, the state of the person with dementia will get worse anyway, even if there is no major illness like cancer. What happens then?

Dr. Hegde: Decline is different from person to person. And it may be fast or slow.

…generally speaking, over a period of time the intake of someone with dementia comes down, mobility comes down, and communication drops to almost zero. They express nothing to us. No activity is possible. Interaction are limited to making sure they are cleaned and fed.

But generally speaking, over a period of time the intake of someone with dementia comes down, mobility comes down, and communication drops to almost zero. They express nothing to us. No activity is possible. Interaction are limited to making sure they are cleaned and fed. You shift them on a wheelchair, and they just sit there. They lose interest in their surroundings and the people around them.

When doctors cannot find any physiological reason for a major decline, they have no way to improve the situation. Things may have reached the final stage, though it still can’t be said how long they will remain at that level and when they will get worse.

Talk to your doctor to find out more about the person’s state. Maybe this is also when you tell your relatives about the decline, so that they can visit if possible. Tell them that later, when things really go bad, you may not be able to inform them in time for them to come.

The person may stay at that level for a while. Or something could happen within a few days. The vital signs may start going down and then suddenly crash, the BP might go down, the oxygen saturation might drop.

Think about whether you need to discuss end-of-life choices with close relatives if you have not already done so.

Think about whether you need to discuss end-of-life choices with close relatives if you have not already done so. It depends on how you discuss and decide things in your family. But if you need to talk and agree about these things, do not delay the discussion if you see a decline.

Watching that decline can be tough for a home caregiver. Try to stay in touch with some someone who can be with you in this, maybe a doctor or social worker or palliative care expert or just a very good friend. You need someone to support you at this hard time.

Thank you, Dr. Soumya Hegde, for your suggestions on how to get suitable medical support, and how to cope with declining health!

In the next few parts, we will look at some specific care topics. Part 3 will include topics around skin, bruises, exercise, massage, and bedsores.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

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